Today, I was taking a break from work and reading my FaceBook page. While that is not unusual, and has nothing to do with Living with Cerebral Palsy, an ad in the right hand margin caught my eye.

If you are like me, standing is not an option. Yes, I have rails and such in my bathroom, so I can transfer to the shower, etc. But, I haven’t really stood up for 8 years, since putting down my forearm crutches. I know some of you have never stood on your own two feet. So when I saw the ad for Easy Stand, I wanted to tell you about it right away.

The contraption enables people with cerebral palsy that are incomplete/complete paraplegics to stand on their own two feet once in a while. For me, I would love to be able to stand up just long enough to cook supper or unload the dishwasher, so I could look into the pot or reach cupboards. Right now, I can’t imagine such a treat!

I got this picture off their site, so you can get the general idea. This is the youth version, but they also have ones for adults and extra tall and heavy adults.

My first thought is that a standing aid might have helped prevent my non-active osteoporosis. Bones and muscles that don’t get used weaken. But, would it also make it easier to do some chores? Would it simply feel great to get off my bottom once in a while?

Do you use one? Would you, if given the chance? Should those of us in wheelchairs start saving for one? Let me know what you think.

Although I truly believe that the United States is one of the most, if not the most, handicapped accessible nation in the world, I have dealt with a few instances, in the last weeks, that remind me of the fact that I cannot always go where I want to, even in America.

About 2 weeks ago, my daughter moved to the college campus. She got a good deal on the rent, if she came a couple of months early. Unfortunately, I haven’t even seen the campus yet; a friend helped her move down and check the place out.

Why? Of course! Her apartment is on the 3rd floor, with no elevator! I would have been useless.

Today, I went to the doctor. Of all the places that should be handicapped accessible, it should be the doctor’s office. I love my doctor, but her office-not so much!

The first 3 parking spaces are designated for the disabled. Unfortunately, the first and part of the second space are next to a steep decline in the parking lot. For people not in wheelchairs, it might be okay. But, I always feel like one small miscalculation and the doctor will be fixing more than whatever’s ailing me at the moment-like broken bones!

If I survive the parking lot, there are two doors to get through, using manpower only. Fortunately, they watch for me and usually come help.

However, I would have to say that the first place winner in the contest for handicapped accessibility and living with cerebral palsy-NOT- is the porta-potty at one of my son’s favorite parks.

It looks something like the picture, only blue. From the outside, I thought it looked pretty cramped for a wheelchair. Fortunately, my friend had to use the facility and could report on the true nature of this accommodating commode. Yes, my wheelchair would fit in there, but for 2 problems:

1. The ground slants steeply up to the building. Okay, I can understand that, because places to put potty’s might be limited for cleaning purposes. But . . .

2. There was a step up into the facilities. Even if a friend is able to give me a shove up the hill, how is it possible to navigate a step up, before being able to get in the door. Even if someone could muscle me up, there was no place to set the chair, navigate the door, get turned around, use the potty, and get back down.

Now, I understand that not every place can be handicapped accessible. I am truly grateful for the many places I am able to navigate. But, if it’s advertised as accessible, make sure it really is!

Who are these people? If they don’t really know someone with the challenges of a disability, they need to “walk in his/her shoes” for half a day. I don’t think it would take any longer than that to figure out that steps and wheelchairs, or other such challenges, don’t go together.

So, what handicapped accessibility issues do you face on a day-in/day-out basis?

No one ever told me how difficult the month of May can be, when your daughter is graduating from high school!

I bet you thought I forgot about you, right? Not so! But, I haven’t had many new suggestions for articles. So, I am going to play the devil’s advocate and ask a VERY controversial question:

Is Living with Cerebral Palsy the Right Choice?

When I was born 7-8 prematurely half a century ago, it was a miracle that I survived. Today, babies born 4 months early are surviving, thanks to advances in medical technology. But, at what cost?

A couple of weeks ago I read the article: Two new pieces of research raise a profoundly troubling question: Is it sometimes wrong to keep premature babies alive?

Several cases of premature children are highlighted in the piece. In short, parents are given the agonizing choice to allow their child/children to die or let the doctors to use extreme measures to sustain life. What makes the choice so difficult is the prognosis. Allow you child to die, or save his/her life at the risk of being profoundly disabled for a lifetime.

In some cases, the parents are blessed with a healthy child, in the long run. Unfortunately, other kids are quadriplegics, severely mentally disabled, in pain, and unable to do anything for themselves.

So, read the article. Then, share your opinion. Should doctors use extreme measures to save a baby that will likely suffer brain damage and live a life of struggling with cerebral palsy and other health concerns?

Although I don’t intend the blog to be solely about CP diet and exercise, it’s a big concern with all of us, especially as we age. Many of us are getting older, and our doctors are watching us sail into unchartered territory. For instance, I am the only patient my doctor has with cerebral palsy. Add crohn’s disease to that, and she has to look a few things up.

So, in response to my plea for blogging ideas, (what my readers what to read) Greg sent me some information on his site, as well as plugging this site. He posted a blog about inspirational people with cerebral palsy. I am probably the least athletic person on the planet; but, I am honored that he thinks I am inspirational.

Greg and Kristen

Greg’s site is dedicated to healthy living. He just happens to also have a mild case of cerebral palsy. But, it doesn’t stop him from doing much of anything. He talks about people that run marathons and master other athletic feats, even with CP.

Greg is a vegan. Thus, the title The Casual Vegan. For those of you unfamiliar with the term, a vegan doesn’t eat any animal products like milk, eggs, cheese, etc. It’s like being a vegetarian+. With great care, to ensure getting all of the daily required nutrition, it’s a very healthy lifestyle.

You may want to snag one of these links, and give his site a visit. You might just be inspired to begin a lifetime of healthy living with cerebral palsy.

Recently, I have been getting some great comments and participation on the blog. I want to thank you very much! Keep it up! It encourages me very much; and, I hope it also encourages other readers.

Among the comments and emails are questions about my diet. It seems others have doctors that “pat them on the shoulder” and offer discouraging advice like: “Just push away from the table.”

Pardon me, but that is not good enough. I needed to learn how to eat to live with CP, NOT live to eat! I needed information about portion sizes, menu plans, and what I needed to include in each meal, in order to ensure a healthy new way of eating, for the rest of my life.

The New Page

Since some of you feel the same way, I have include a new page on my blog, with a link to download the documents my dietitian gave me. Of course, there are notes that are specific to me, because of my special needs, but the papers are for a 1500 calorie diet. (Of course, men need more because their metabolism is higher, and they burn more calories.)

Also I have included a link to a heart healthy cookbook. However, there are a lot more on Amazon.com, or check your local bookstore.

Remember, this is NOT information to lose weight and then go back to the old eating habits that caused a problem in the first place. The plan is to learn to eat healthy, get into the habit, and keep it up for a lifetime.

The Willpower Problem

Now, it’s time to make a confession. I have a willpower problem. Although it’s getting easier, I love fast food (I hate to cook), and I have a sweet tooth. So, I had to come to terms with both, or I couldn’t have lost an ounce.

First, I have discovered that most fast food places have relatively healthy items on their menus. For example:

The real killer in fast food is the preparation. Stay away from the fried stuff. (Sorry, French fries included!) Avoid the dressings on the sandwiches, even if they are baked. Take it home and add ketchup or mustard, if you can’t eat it dry.

Don’t forget the Sweets!

Okay. When it comes to sweets, this is what works for me. If you have absolutely no self control, and will sit down and eat a whole gallon of ice cream, you may need to come up with a better plan. But,. . .

I allow myself a cheat day. Yes, it’s true. I pick Sundays because that is often when I go out with friends, and I especially don’t like to cook.

On Sunday, I eat what I want (unless I am medically supposed to stay away from certain foods), sweets, etc. The trick is to be VERY GOOD the other 6 days of the week. Then, think of it as a reward.

I find it better to plan a cheat day. Then, I am less likely to “fall of the bandwagon” and resume my old eating habits.

BEWARE!

However, be forewarned! Once you get into the habit of eating to live with cerebral palsy, and not living to eat, you will find it difficult to “pig out” on your cheat day. Once you start losing weight and your body begins to like eating healthy, you might make yourself sick when you go back to those favorite unhealthy treats. Moderation, even on cheat day is key.

The Best Part

Good news! The best part of eating healthier will not just be the loss of a few pounds. The best part is simply feeling better, on the inside and out!

I still haven’t reached my goal weight. I am a work in progress. I have been at this for almost a year. I can’t weigh on a scale, unless I go to the hospital, because of the chair. But, I have gone down 6 sizes, (50 lbs??) it’s easier to lift myself around, and I feel so much better.

I still have my chocolate candy bar, once in a while. I don’t really like fried foods anymore. When I eat at my mom’s (she is the best cook), I eat a little bit of everything. Although I would like more, my body feels like I stuffed myself with the whole Christmas turkey! So, I quit.

The first few weeks are the hardest. But, it gets easier, especially when you start feeling healthier.

So, if you want to lose weight and need a diet partner for encouragement, you know where to find me.